Story of My Skin | Hidradenitis Suppuritiva

If you’re squeamish about body parts and illnesses this probably isn’t the blog post for you; I’ll see you on Saturday for the usual lighthearted content. I’m scared as I write this. This isn’t something I really talk about with anyone except medical professionals or anyone who might be about to see me naked, but I have a rare skin condition called hidradenitis. Please note, this post is VERY long, covering ten years of my experience with the disease. It’s here to raise awareness, and I hope you at least read a little, as it’s so frequently undiagnosed.

I don’t have the confidence to post a photograph of my scars or cysts here, so here’s a picture of me on an early Sunday morning in the Northern Quarter. I hope you’ll forgive me for not sharing what my body looks like on the internet.

Hidradenitis Explained

Technically it’s hidradenitis suppuritiva (HS), or acne inversa, which I do not recommend google image searching. It’s probably an auto-immune disease and causes me pain on an almost daily basis. The reason I’m talking about this today is because it’s frequently undiagnosed and is more common for women. HS has links to Crohn’s disease, hormonal disorders, hirsutism and pilonidal sinuses, but honestly, nobody really has any clue as to the cause, and even worse: there’s no cure. It is thought to affect about 1% of people, but this is likely inaccurate, in part because it primarily affects the areas underneath the bust, the groin and armpits, and people are understandably reluctant to show a doctor their fanny. It causes painful abscesses which are prone to bleeding and leaking pus. It’s embarrassing, can have a serious impact on self-confidence and has been linked to depression. HS is a chronic disease; some people may find that it becomes inactive over time but it can return at any point.

HS is in no way dangerous to your health, meaning it’s not exactly top priority for research, but in the worst cases it can eventually become debilitating. On my worst days, I can’t walk for pain and have to stay at home, although this usually passes within 24 hours. It definitely had an effect on my mental health when I was younger, and still does today; I didn’t have sex until I was 23 because I was terrified of rejection because of it. I’ve been very lucky, with understanding boyfriends who half the time didn’t even notice, but whenever I do really look at my scars and lesions I’m likely to have a bit of a breakdown.

Describing A Flare-Up

I thought the easiest way to explain might be to describe what happens when I have a flare-up. I always have some cysts present that cause mild pain when walking or wearing a bra, depending on where they are. The majority will eventually die down on their own, but at least once a month I get a really bad one. The bad ones look like a boil: red, shiny and a large bump. The worst ones for me are usually around my groin. It will sit there for a few days, sore but not excruciating, and I’ll keep an eye on it praying it will go away on its own, and then one morning I’ll wake up in agony.

It will be incredibly sore to the touch, to the extent that I can’t even wear knickers without crying. On these days I’ll take a sick day from work or ask to work from home, and I’ll make sure I have a hot bath. This helps bring all of the gunk to the surface, and if I do this it will often burst with gentle pressure. Applying that pressure is genuinely the most painful thing I’ve ever experienced, but once the abscess bursts it rapidly feels better. There will be a whole mess of blood and pus and you’ll probably end up wadding some loo roll and holding it there for a while, but it will generally feel loads better almost immediately. That whole process will take about three hours, but in the days before I do my level best to prevent flare-ups I can sense coming. I’ll talk about managing HS a bit more below, so keep reading for that.

My Diagnosis

I was very lucky in that I was diagnosed early, at just 15. An early diagnosis really helps, as I’ve been managing my HS as well as I can for ten years and it’s likely that it would have been much further along than it currently is. I would say that if you suspect you have hidradenitis, go to your doctor as soon as you can and ask for a referral to a dermatologist. My doctor listened and referred me straight away, but when I’ve talked to others about it in the past they’ve fobbed me off, saying it’s just ingrown hairs, that I just need to wash better, that it’s a normal part of puberty and similar bullshit. BE PERSISTENT. I was diagnosed almost immediately by the dermatologist with hidradenitis, and actually understanding what it is can be a huge relief.

I first noticed small, hard, pea-sized lumps in my armpits and around my groin while in high school. They would appear, then disappear after a week or so. I ignored them for a while, but eventually, I mentioned them to my mother who took me to the doctor ASAP. Our initial worry was breast cancer, as lumps in the armpits are one of the common signs. Hidradenitis is a hell of a lot better than breast cancer, but it’s still not great.

Hidradenitis might be hereditary but no one is certain. My Mum doesn’t have it and my Dad is dead, but my Mum remembers him having similar lesions although not as severe, so it seems likely that it was genetic for me. At 17, I developed a pilonidal sinus just above my bum, which is linked to HS but is often caused by other factors. It’s basically where two tiny hair follicles form a tube, and it can become infected very easily, often by something like a hair becoming trapped inside. For me, it was likely just caused by my hidradenitis, but it’s also common for particularly hairy men, a description I don’t fit. I had a few that just went away on their own, but on my 17th birthday, I had a very bad one. It burst on its own, leaving me with a pretty major wound, and I had to have minor surgery to “scoop” out the bit of my body that was prone to them, so I have a scar just above my bum. I tell people it’s from when I tried to grow a tail.

The later stages of hidradenitis are much worse than those tiny lumps I had as a teenager. I now have large amounts of scarring around my groin, armpits and under my bust, and my abscesses are painful and omnipresent. I was prepared for it, aware of how the disease may change and develop over the years. However, if you have no idea what’s going on, I can imagine it being pretty scary. Considering the number of doctors I’ve had to teach about HS, rather than the other way around, it would be even worse if you didn’t know what was happening.

Managing Hidradenitis

Managing hidradenitis is a bit of a losing battle, as you’re never going to get rid of it entirely; however, you can help by avoiding things that can aggravate the condition. Breathable fabrics help, as excessive sweating has been linked to the disease: it’s frequently inflamed sweat glands that swell up into cysts. I’ve also found that using spray-on antiperspirant rather than a roll-on helps for my armpits, as there isn’t a solid layer of cream or something blocking the pores and glands. I use a standard Mitchum one if you want a specific recommendation.

I’ve already mentioned hot baths helping with flare-ups, but they’re also a good thing to do if you have the condition in general. It may sound crazy, but a capful of Dettol in your bath can also help. There is a link to some bacteria with HS, but it’s not really the kind of thing you can control. It can aggravate existing cysts, so it can be worth doing, especially if you think a flare-up is imminent. It’s not exactly a luxurious Lush bath and you’ll smell like Dettol until you shower, but I do find it helps.

You’ll likely be prescribed an antiseptic wash, which I’ve generally found to be useless, but some people find it helpful. If you have eczema or are prone to dermatitis don’t let them give you Hibiscrub, as it can dry out the skin; there are others that won’t aggravate you.

Avoiding shaving areas like your armpits can help, although it’s entirely possible you won’t even be able to properly shave there if you have active lesions.

Embrace sleeping nude! Or at least wear loose, cotton pyjamas. Giving your skin every chance to breathe and recover will really help, plus sometimes abscesses will be too sore to touch and you’ll just have to sleep naked and hope the fire alarm doesn’t go off.

Being overweight can exacerbate the disease, so losing any excess weight can help. This is the one thing I’ve never managed to do, but for the first time in my life, after experiencing several months without symptoms (keep reading for how that happened), I’m motivated to lose weight for the sake of my health.

Types of Treatment

I’ve already said that there’s no cure for hidradenitis, and that’s definitely the case, but there are a few different treatments that you may be prescribed depending on the severity. There are a few different scales used to describe the stages of the illness;Wikipediahas the best description of them. I currently fall under the moderate, or stage two category, but when I was first diagnosed I was stage one, or mild.

Antibiotics

When I was first diagnosed I was given various antibiotics, mostly tetracyclines. I’ve had most antibiotics going and have generally had no adverse reaction to them, aside from Doxycycline which makes me throw up without fail. You may be put on a six-month course of antibiotics, which admittedly didn’t do a great deal for me, and isn’t sustainable as the bacteria may become resistant and cause them to stop working. Antibiotics only treat the bacteria that can cause infections, not the root cause of the disease; essentially, you’re only treating the symptom, not the cause.

I’ve found that when you can tell a flare-up is coming, it can be useful to take a short course of antibiotics, as it can help bring it under control and seems to reduce the severity, and sometimes helps avoid the awful oh-god-I-can’t-walk stage. However, you have to act fast, however, as at least in my case you can only tell a few days beforehand if you’re going to have a bad one, and sometimes not at all. I’ve moved around a lot since going to university, and it’s generally involved me registering at a new doctor’s and being forced to make an appointment to bully persuade the doctor to give me a repeat prescription for an antibiotic I know works for me. This means I can go to a pharmacy at basically any time and request a two-week course, and if they don’t have it in stock there and then it will usually be in by the next day if you go to Boots or Superdrug. For a long time, this was the best way for me to manage and treat my HS, but after ten years of being put on antibiotics and taking regular short courses, they seem to be less effective. I can’t tell if this is truly because the bacteria have become resistant, or because my HS is just more severe.

Hormonal Birth Control

If you’re female you may be prescribed the pill, usually the combined pill. I was on this for both acne and HS at the end of high school and early sixth form. I was fine while using Marvelon, although I didn’t find that it had any effect on my skin. However, my doctor switched me to Cilest during lower sixth, as Marvelon had a risk of causing blood clots, and it sent me LOOPY. I was a completely different person. I was angry, irrational and prone to bizarre mood swings. I screamed at my mother who I never argue with, wept at the slightest provocation and literally ran away from school when someone told me a friend fancied me because I saw him in the corridor. This happened within a week of taking the tablets, and it took us about two months to figure out that I wasn’t just going through a late moody teenager phase. Within a week of stopping the medication I felt normal again, and haven’t touched hormonal birth control since. I look back on that brief period with trepidation; I remember feeling like I couldn’t control myself, lashing out at everything and everyone, both with words and physically. The personal statement I attempted to write for university back then is hilariously aggressive, with me asking the admissions coordinator “who the fuck they think they are” – fortunately at this point, my Mum stepped in and I didn’t send it. I wrote a new one a week later which was much more reasonable.

Roaccutane

I also suffered with cystic acne, especially during university, and I was eventually given roaccutane by my dermatologist. I can tell you, with the amount of times I’ve seen a dermatologist over the years, living near Birmingham Hospital while at UoB was a real blessing. Roaccutane did absolute wonders for my acne and I will forever be grateful to it, but also seemed to clear up some of my hidradenitis – I no longer get cysts in my armpits. I have no idea why it only sorted my armpits, but I haven’t had an abscess there since my second year of university, which was 2011/2012. It’s not one of the recommended treatments for HS, but some people, including me, have seen an effect. It was a real blessing for me, as it finally meant that I could wear vest tops and strapless dresses in the summer. I still have some scarring, but that’s improved substantially over the years without me doing anything.

More Antiobiotics

In October 2017, I was prescribed a new course of antibiotics. My hidradenitis has worsened in the last two years, and I realised that I hadn’t seen a dermatologist about it since university. After a real struggle to just convince a particularly stubborn doctor to refer me, and then waiting more than six months for an appointment, I finally saw a doctor at Salford Royal Hospital. If you’re in the North West and can get to Salford Royal, I highly recommend them for HS treatment. I was given a relatively new treatment: a combination of Rifampicin and Clindamycin, two pretty serious antibiotics, for a 12-week course. Within two weeks my HS was gone. I was genuinely confused when I realised that I hadn’t been in pain for a week; I was used to being in at least some pain every day, and it was strange to realise that was what was missing. I knew something was different, but couldn’t pin it down for a while. The only side effects I had were some mild diarrhoea, a few migraines and, hilariously, bright red sweat and urine, which was perfect for Halloween. Rifampicin is usually used to treat things like leprosy and meningitis, and Clindamycin is commonly used for severe infections. They were absolute wonders and god damn I wish I was still on them. I was in complete remission for the entirety of the course, but now that it’s finished my HS is back in full force. Some people have lasting remission, but that doesn’t seem to be the case for me. I’ve now been referred to a specialist HS clinic to see if they can put me back on the antibiotics, but doctors are generally hesitant about long courses of antibiotics for the reasons discussed above.

Immunosuppressants

The only other currently available treatment is Humira, which is an immunosuppressant. It’s been proven effective for treating severe hidradenitis, and is the only treatment I don’t have experience with. Humira blocks the production of TNF-alpha, the protein that is most clearly linked with HS. It’s not for everyone, as immunosuppressants leave you vulnerable to other illnesses. You also have to inject yourself on a regular basis and it has a whole host of side effects, so it’s only prescribed for severe HS. I may reach that point one day, but for now, I’m just pursuing a second course of Rifampicin and Clindamycin.

Links

If you think you might have hidradenitis, your best bet is to see your doctor and ask for a dermatologist referral. The links below provide more information, and I’d recommend reading through them if you have HS or just think you might.

If you have any questions for me regarding HS, whether you think you might have it, if you want to ask about my experience or anything at all, my Twitter DMs are open, or you can email me at bramblingblog@gmail.com – I’ll always listen.